David and Goliath, or, the Sick and the Bureaucracy

Malcolm Gladwell, the New Yorker writer, has grown rich with a series of books exploring the sociological dimensions of success and failure. In his latest, “David and Goliath: Underdogs, Misfits and the Art of Battling Giants,” Gladwell celebrates the many Davids who triumphed over the odds because they were nimble and resourceful.

If he wants to observe a classic David-versus-Goliath rumble, Gladwell might want to go to Washington on Tuesday (Dec. 10). He will see a frail woman go up against the federal government with a humble petition and a small following of mostly very sick people.

Her name is Susan Kreutzer and she suffers from the debilitating and mysterious disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, which is the name patients favor.

Kreutzer and others will begin their demonstration at 9a.m. outside the headquarters of the Department of Health and Human Services on Independence Avenue, where she will hand over a petition. Then she will move up the street to Capitol Hill to demonstrate and hand-deliver petitions to members of Congress. She will end her day of petitioning her government outside the White House.

Kreutzer has no idea how many, if any, demonstrators will join her, but she assures me she has the required permits to demonstrate. Another time, only six demonstrators turned out,, but they unfurled a huge banner and stood on he street telling the oft-ignored story of their suffering to anyone who would listen.

Telling your story in Washington without a big-bucks lobbying firm or celebrity friends is not an easy assignment. Not only is there the high chance of being ignored but there is also the chance of being discounted as one of the apocalyptic “end of days” proselytizers, or those who believe the CIA has it in for them and who habitually assemble at the White House and elsewhere. In other words, it is easy to be dismissed as a “crazy.”

But Kreutzer, who will have a warm-up demonstration on Dec. 9 in San Francisco at the HHS offices there, believes in the strength of small voices, of a murmur in the cacophony of Washington petitioning. “I feel I have to do this,” she said.

This year, the victims of CFS are particularly upset with HHS and its dependent agency the National Institutes of Health. They are fuming at the decision of NIH to seek a new clinical definition of their disease, supplanting the Canadian Consensus Criteria, which has been the diagnostic gold standard for researchers who are deeply committed to finding a cure for a disease that affects as many as 1 million Americans and another 17 million people worldwide.

It is a disease that simply confiscates normal life and substitutes an existence in purgatory, where victims can be confined for decades until death. Sometimes they will be so sick they must lie in darkened rooms for months or years; sometimes they can function for a few hours a day, usually followed by collapse. Dysphasia — word confusion — increases. Lovers leave, spouses despair and the well of family compassion runs dry.

The first and major complaint of all those in researching the disease and those suffering from it is that NIH spends a trifling $6 million on this circle of hell that could have been invented by Dante.

The second and immediate source of anger laced with despair is that NIH has, apparently arbitrarily, decided to have the clinical definition of the disease reclassified by the Institute of Medicine and has diverted a precious $1 million to this purpose. Thirty-six leading researchers and physicians from the United States, risking retribution in funding, protested the move but were ignored. They were joined by colleagues from abroad, bringing the blue-ribbon protesters to 50.

Still nobody knows why the move to reclassify the disease. One school of thought is that NIH would like to abandon the current and well-accepted diagnostic criteria, known as the Canadian Consensus Criteria, in order to treat the disease as more of a mental one rather than a physical one.

I approached HHS for a comment and for a word with Dr. Howard Koh, the assistant secretary in charge, but have received no response.

Will this David, Susan Kreutzer, fell this Goliath, HHS? — For the Hearst-New York Times Syndicate

Comments

Dr Erich Ryll of the 1975 Carmichael, "Mercy Hospital" outbreak of what he called "Infectious Venulitis" explained why these redefinitions take place.
Everything he said about "Infectious Venulitis" was certain and authoritative..
The moment a new name and definition is made up, his outbreak and evidence is rendered "speculative" and a comparison against the new one, automatically throwing everything in doubt.
Dr Ryll was furious when "CFS" was coined.
His years of work and observation were instantly "bypassed" by the new paradigm.
It's like setting the clock back, "Start over at Square One".

Dr Ryll warned me that when "CFS" began to have too much evidence, to watch out!

They're redefine all that evidence right out from under you.,.. again… so they can start the game all over.

Thank you, Mr. King for this very accurate and incisive piece on a big story that is mostly neglected by major media. There is no reason for the IoM definition but to cloud the science once again with an inaccurate definition. The evidence speaks for itself.

Do we need the State Legislature ala LCB to check New Mexico's HR statutes and regulations? How about City of Vegas, County of Clark? Any indication that Metro Police would or could terminate an officer a week or two after misbehavior instead of paying the officer for a year or two while HE checks his employment options and eventually resigns?

I am honored to have been included in your very eloquent article about this illness. Thank you so much for all the support who are giving to this huge group of patients who have been repeatedly neglected and abandoned by our government and a majority of our medical community.

Thank you Mr. King for bringing this article to light & our attention. And for being an advocate for those of us who are unable to help. Go Susan Kreutzer! My heart is with you even if my body can't be!

Once again thank you for a great article. There is a lot of tweeting going on about the IoM redefinition. — Jean

Thank you for writing about Susan's demonstrations next week!!!!! and for continually caring about our community. you are a blessing.

I think you likely know about the HHS demonstrations I organized/led a few years back? just for history's sake, I'll send you the article i wrote on "how to" demonstrate, because at the bottom of the article are the links to all the videos of all the demos I did, in front of HHS, the Red Cross, etc. http://www.prohealth.com/library/showarticle.cfm?libid=16936&nbsp;

I'll also include those links at the bottom.

I never could get any press to cover my demos, except the one in front of HHS in San Fran. that got us on the front page of the San Fran Chronicle.

Each time I organized a demonstration, i tried to make it public via a video to inspire others to demonstrate too. no one did do any subsequent demos in the USA, though there was one in the UK. Susan is the first in the USA to get in front of HHS to demonstrate since I wrote my "how to" article on how to do it.

Getting the ME/CFS community to demonstrate is like pulling teeth: we are too sick, too poor, too disorganized. too timid. folks seem to think that demonstrating is some kind of no-no. they don't realized it is a democratic tradition to protest and demonstrate.

Mostly, though, we are too sick. so each time I organized a demonstration, I tried to make it easier and easier, until I finally came up with the idea of demonstrating from your own bed via a video demonstration that we'd send to Sebelius. No one did that either. ::sigh::

== Rivka's Demonstration Video Library ==

The below videos are related to my ME/CFS demos and activism in 2010-2011. I hope they may inspire others to demonstrate, too.

October 3, 2010
Video: http://www.youtube.com/watch?v=z5eLRxtQLok
(5 min: Comedic video pressuring the Nat'l Institutes of Health — the resulting campaign was a success, but unfortunately it was stopped too early for significant results.)

I just read your article in the Las Vegas Sun. Thank you so much for your continued advocacy for the ME community. Thank you for remembering us. Thank you for fighting for us. We are – and I am – so very thankful.

Thank you so much, Mr. King, and to Deborah W. I have just come across your videos regarding ME/CFS in which you are interviewing experts in this horrid debilitating disease. We cannot thank these dedicated doctors enough for continuing investigation on our behalf!! Yet, for the most part they are forging ahead on their own–with little to no financial government support. We are now at another crossroads / pivotal time with ME/CFS with much science proving MANY biological problems with the disease of ME/CFS. Unfortunately, for p/w ME/CFS at the same time, and before results are published and replicated, the HHS has rushed in and contracted the IoM to 'define' this disease . . . to bury us with this new re-de-definition.
We applaud you for your reporting in helping the ME/CFS people/patient community in seeking the truth and justice to this 'hidden' life-stealing disease, and look forward to more of your reporting. Thank you !!

This "David and Goliath" article – published earlier by the Las Vegas Sun – is no longer on their site. Does anyone know why this story appears to have been removed??
Thank you, Mr. King – Thank you, Ms. Kreutzer – Thank you all who work for this patient population.

I’m not sure why The Las Vegas Sun took down the article so soon, but I don’t think it was anything sinister. Anyways, it will remain here on the White House Chronicle Web site, and on the ME/CFS Alert Facebook page. — Linda Gasparello

One comes across readings on success and failures. The readings normally one can find in self-help books or fiction. David & Goliath by Gladwell is one interesting collection of nine essays by author on different aspects at least I didn’t come across earlier. The collection starts with the story of David & Goliath, how the same story can be viewed differently. Easy and quick read as well.

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